6.5: hey! Not v. much higher than last time and purple-red-black. How happen? Meter runs high, then calibrate Dex also run high?

Anyway, A1c good news. Phew.

Bad news: lost weight. (Guess normal for celiac, probably gain some by next time, nobody worried.)

Other bad news: Vitamin D deficiency. Is that normal for celiac?

ENDO: Nnnnno—not really. We just check for it because a lot of kids with Type 1 are deficient

BIGFOOT: Is that the one we get from the sun? Because he spends plenty of time outside

I’ve made myself comfortable in endo-land. I didn’t even rewrite this page of data, even though—who knows what Joe’s “14 / 14” means. This is the bathroom-door-open-after-the-honeymoon equivalent of the d-parent/endo relationship. I love this endo.

ENDO: And he’s not really deficient; he’s just at the very lowest end of normal, and we want it higher. Probably wears a lot of sunscreen?

BFOOT: Not since the summer. Really, I’m not that vigilant about it

ENDO: Probably wore clothes

Other part of conversation:

ENDO: Wow, so he has (counts on fingers) four! Autoimmune diseases

BFOOT: Four?

ENDO: Diabetes, Hashimoto’s, celiac, and psoriasis

BF: Ah. I forgot about psoriasis (<— barely ever had)

-silence while Endo send Vitmain D prescription–> CVS via laptop as if play doctor on The Jetsons–

BF: And I’m pretty sure he also has vitiligo; I’ve seen some pale splotches (<–overachiever)

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15 comments

I’m Vitamin D deficient too – just barely. I had the endo check for it because I hear Vitamin D is somewhat of a buffer against possible complications. I kinda wish they made it in a pump though because I have so much trouble remembering to take it!

Everyone in Minnesota is Vit. D deficient. Not even joking. When I was first diagnosed with that my doc put me on a super strength Rx for a few weeks and then said I could switch to just over the counter 2,000 iu/day. If/when Bubs starts taking a multi-vitamin make sure to see how much Vit. D is already in the multi and then you can add to it with individual Vit. D pills (if you ever find yourself in this scenario).

Do you think he really had psoriasis, then? I had terribly rashy legs and crooks of my elbows from undiagnosed celiac. (I got bad dry hands too but I don’t know if that was celiac or not.)

I’m very curious about your synesthesia -my boy says words have color. He was distraught once when he realized he has mistook the spelling of a word, and when he found out the correct spelling, the word changed color.

I’m curious about it too. I didn’t know until recently that not everyone has these associations. Mine’s pretty much only for numbers, and I think it helped me memorize multiplication tables and remember phone numbers and stuff, because I have a sort of aesthetic/emotional reaction to the color combinations. Basically, it’s all part of being a super-genius.

Everyone, it seems, has a so-called Vitamin D deficiency lately. It seems to be the latest – dare I use the word – fad diagnosis (unlike celiac, which is not a fad and is very, very real). I’m not sure if it’s because of a somewhat recent correlation discovered between Vit.D and T1D or what (note: correlation could be cause, could be effect, could be coincidence, could be nothing. In short, meaningless and inconclusive, but it’s been reported).

A year or so ago, my endo issued a blanket-recommendation for all his patients to take 1000 IU/day of Vit.D (OTC) – not based on any labs or anything from each individual patient.. I’ve done this and noticed no change in my general well-being at all. I know of a few others (two in the DOC whose names I recall) who were prescribed something like 10 times that amount. I don’t know if they followed through or experienced any side effects from it. But a doctor once prescribed my wife a massive Vit.D dose (15k, I think?) and she’s gotten sporadic itchy rashes ever since, which need a prescription-strength antihistamine to remedy. She swears there’s a correlation. I have no idea, but I thave no reason not to believe her. She’s stopped the Vit.D, but the itchy spots remain.

My point is that I have absolutely no idea what the frick I’m talking about, but I think doctors are too quick to pull the trigger on Vit.D supplements without knowing everything about it. The thought is that it’s natural, so it must be safe (the argument used by people who get high off of herbs, and I counterargue by mentioning things like tobacco, poisonous mushrooms, and grizzly bears). Just, whatever you do with regards to Vit.D, please do it gradually.

(Please keep in mind also that it’s 3am and I’m lying on my 2yo son’s floor until he goes back to sleep, so that’s a peek into my state of mind at the moment)

Our endo also has participated in teplizumab research and offers it to newly diagnosed. Not sure if they are still participating in the study. But I believe it will preserve beta cells longer and perhaps some will be preserved a very, very long time. Even a very few beta cells can make a difference. Our DD was dx’d at a time when they were doing CD3 research with Dr. Herald but too young and/or not enough weight to participate. They would not make any exceptions at the time. The Tep. works to some extent, I think. I would enroll in a heartbeat if newly diagnosed.

I tried to convince Dr. Herald to take ME into the study. I am that perfect combination of “technically meets T1D criteria” and “functioning betas galore.” He was unmoved. Scientist first, dreamboat second.

It does seem like Vitamin D deficiency is the new diagnosis fad = I’ve got it, too, and keep being tested about every year by one or more of my various doctors. But then, I have lily-white skin and burn like a lobster in the sun, so I attribute it to the barrels of sunscreen I wear outside.

I’m part of the Vitamin D deficiency club, but for me, the massive doses did make an immediate difference in so many areas. (Pain in my joints, sleep issues, etc.) I’m waiting on the latest labs, but I think I’ll be back to another mega dose regimen. (I did a post on this a while back… It’s the David Donald Doo one.)